Wednesday, June 24, 2009
Do you know how fusterating it is to get turned away from a pain clinic?? They told me that they could not help me! my condition is pretty much untreatable according to them and they cant help me....WHATEVER! I have faith that this new doctor will help me, and eventually I will find some relief.....
It is very difficult to live everyday in pain and still try to be the best mother possible, but I am trying everyday tomake it through and do the very best I can.
CA thus far has been fairly uneventful knock on wood! At least for the most part...there is still alot of drama going on at home, with people making assumptions and comments to others that they prob should not be making...just causing more drama and tension. I fel torn between staying here in CA and going back to OK. SImpley because My step dad doesnt want to take any more meds. He has been having sezuires every other day or so ...and I guess he also does not want to go through Kemo agian....part of me understands and respects his choice, butthe other part of me wants to shake him and say...do you know what this will do to your wife, to your grandkids if youlet yourself die? -Does that sound selfish? I am not trying to sound selfish....I just dont want to deal with any mor eloss in this family. ughh. I have some good friends in POnca city- or at least today they are good friends- we will have to see what tomorrow brings....and good friends here in CA....I really cant afford to live on my own in CA...and have my own place in OK... I have vertually no one to BABYSIT in Ponca-everyone works- but in CA i have Family that can help. In OK i can homeschool Cee, but in CA its a bot harder to do, IN CA she can do her modeling , in OK its a little harder and she cant get the work she is used to getting. I have three really good friends in CA Sarah, Jenny and Angelique. In OK all of my good friends are on a yoyo type thing right now and I feel like I have to tip toe arounds everyone...IN OK i have no x-in laws to try and make my life a living hell- IN ponca I am free to do what i want when i want with my children without fear of them being kidnapped or emotionally abused. those are my delima's.....as of right now i plan on staying in Ok for the -well who knows how long- but what happens if my step dad passes away? what do i do then? do i move to ca and help my mom, does she move down with me? how do i help her and maintain my family structure and peace.
I am just tired, tired of being in pain and tired of questioning everythingin life..and the things i dont question someelse does...and makes me feel like i have to answer to them..as if I owe them?
ugh is the word of choice again today....
Tuesday, June 16, 2009
Tuesday, June 9, 2009
Out of all this B and D and April Rose stuff..I think it would be important to remember the good she brought forth, and continue to pray for her as she obviously is in need of prayers and compassion right now. why not take something good out of something bad???
curious to know what everyone thinks
I have been in alot of pain lately. I hate taking medication all the time, but also hate being in
pain on an everyday basis...so its a lets take the lesser of two evils..right? Ughh. still cant find a decent doctor to help. Neurofibromatosis is either not known enough about or so well known that they know there is no cure so they figure they cant help and well thats that....my tumor that i have in my jaw is huge in comparrasion but its the one in my back that hurts..feels like i have a constant kidney infection. I constantly pray for comfort, i suppsoe the fact that i am able to sit here and type this right now is in itself a gift from god.
Here is a pic of me and my kids.
Mikeys been doing okay. The doctors are lowering his medication. For those who do not know mikey has been hospitalized three times this past 1.5 years for phyciatric reasons. The doctors feel he isprob suffering from Bi-polar but say hes to young to offically diognose it as being that . He also had ODD- oppositional defiant disorder and ADHD..on top of all of that he also has Hyperthioridism. I never wanted to believe in the whole ADHD ODD bi-polar thing..but when your 10-11 year old child is talkining about suicide and putting holes in your walls, breaking windows and has a glazed look in their eyes then not two second later is crying , then another min later is a sweet as can be...it kinda makes you wonder. Most of which of what is going on with himis i think enviormental...he had an very abusive family member who verbally, and emotionally abused him for many many years.....he is really just now begining to heal from that.
As for the hyperthiroidism, we are working on his diet, and other way to help him. He does take med s for it, but i think the proper diet will help more then any meds will. Its interesting to find out the foods he likes and doesnt like...his new fav..Jazmine rice and tofu? -who would have thought right.
Cecelia is starting to show more signs that she might also have Neurofibromatosis. we had prayed that she , as mikey is, would be NF free. Cecelia is starting to show more spots on her tummy and under her arm area. She is mixed with African American so its harder to tell becasue her skin is darker. I suppose when we get home I will have to have her tested. I am not looking foward to that process..even though its a simple blood test, the thought of my daughter having to go through anything like i had to go through when i was a child is just...well frightening.
well that is about all i have in me for now...Still kinda blown away by this whole April Rose thing..trying to be a good christian woman, not judge, but its sad and I am saddened by the pain and lonlelyness this woman must be feeling to have made up something so big. I am sure everyone - well most agree.
Will be back later.
So maybe this lil girl doesnt exsist and maybe this woman has toyed with our emotions and maybe we have been praying for a baby that doesnt exsist, and yes maybe its harder for those who have lost a baby..no doubt. But I would like to think it would almost be a RELIEF if this turned out to be a fake, then at least someone who has lost a infant or child would know that someone else would not be feelinhg that overwhelming pain and loss. Thats just my opinion. Maybe i m too forgiving, I dont know, but I do know I am not ready to turn my back on this woman who obviously needs prayers..no matter how you look at it. Who am I to say anything more..then God bless you sister and help to heal you mind and heart. Agian..just my opinion.
Sunday, June 7, 2009
I tookthe kids to Johns Incredible pizza yesterday, actually my sister in law paid but we all went ....anyways..its very fusterating to me to try and be the " bigger" person...to be the Christian..one of the bunch...to not judge or say something mean or retalitory-is that even a word?..Anyways, a lil backround, my family has always treated me differently, I think partially due tothe fact that I was always sick as a kid...
I think my bro and sister actually resent me for being sick...They both treat me like crap, even as an adult..they both act as if they are better then me and they say mean and hateful things all the time..to the point where i dont even want to be a part of their lives,,,,,,and yet..I love my nieces and nephews.So thats where the " shut up and take it" comes in..I feel like if i want tohave anything to do with my nieces and nephews, I have to sit back and take their abusive words.
My niece has Cystic Fibrosis and we dont know how long she will be with us..we are praying for her and hope her health will continue to get better. but still its the not know-ing that is hard. I am sure she will lead a full and happy life, i just pray my sister will include me in her life and yet i am affraid if i say one thing wrong....thats it shes outta my life, just like my brother did with my nephew...
WHen did family become so disposable?
I cannot figure out what it is God has planned for me...I will be 32 years old tomorrow and I have done nothing with my life, What mark will I leave what legacey will i leave my children? I cant work because of the pain and other issues my tumors cause...I have considered writting childrens books baout neurofibromatosis or cystic fibrosis or even just general medical issues kids have to go through, thought about making a photography book about autism, thought about taking photography classes and becoming a photographer for NILMDTS, ..goodness so many things that i htink im being called to do..but do not know for sure...i dont think i have enough confidence in myself to do anything....I want to but just dont....FUSTRATING
for some reason I have been tortuing myself with these really sad blogs about these amazing wemen who deliver beautiful babies that go to hevean- way before what should be their time...I mean these wemen are incredible and i cant even imagine the pain they are going through...I think God may have in a way brought me to them for some reason, but i cant figure out why? I at some times think they were brought to me..to make me appreciate my kids more, but that in itself is so hard and difficult...because now i feel guilty every time i feel like " i need a break" I think of these wemen who would kill to have a screaming child in their arms or a temper tantrum throwing 6 year old....and yet here i am complaining about it..I love my kids so much....would not trade them for the world..i have to at times rememebr i am a single mom with vitually no support who herself has medical issues and a son with major medical/mental issues and i am doing the best i can with what god has given me.......and yet its so FUSTRATING
so while i pray for the healing hearts of these wemen who have lost their children, i also pray that god shows me what path i am suppose to take here and why he has brought me where he has....
Where to know God?
another post here in a few / more pics of the kids
Thursday, June 4, 2009
Neurofibromatosis is defined by tumors, called neurofibromas, that grow along nerves in the body, or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions.
Neurofibromas often first appear in childhood, especially during puberty. The first noticeable sign is almost always the presence of brown café au lait spots. These distinctive spots don't hurt or itch and never progress to anything more serious than spots. They can be found anywhere on the body, though not usually on the face. Tiny ones — freckles — may be seen under the arms or in the groin area.
Many neurofibromas can be removed. Although usually benign (noncancerous), an estimated 3%-5% become cancerous.
Of the two types of neurofibromatosis — NF1 and NF2 — NF1 is more common, occurring in 1 of every 4,000 births and affecting an estimated 100,000 Americans. It is also known as von Recklinghausen disease.
NF2 is characterized by the presence of bilateral acoustic neurofibroma-like tumors and is rarer, seen in 1 in 50,000 births. People with NF2 usually develop benign tumors on the nerves in their ears, causing hearing loss, eventual deafness, and problems with balance.
The severity of both types of neurofibromatosis varies greatly. In families where more than one person has NF, it can present with different physical signs and complications for each person. At diagnosis, it isn't possible to know right away whether a case will be mild or lead to severe complications
Tuesday, June 2, 2009
so its been a few hours since i started this blog tonight and I have been reflecting and praying.I wonder if i am not good enough sometimes to be walking this path with jesus...I know it is prob the devil talkin in my heart making me feel this way, but then agian i just dont know sometimes. gosh i prob sound so confused. The thing is, I dont understand why Jesus just cant be enough. why cant he be enough for me? I know he did not intend us to be alone right I mean hemade Adam and Eve...Ughh
I will continue to pray and hope that, no..know that God has a plan for me and I will someday find the peace I need. It may or may not be in the arms of another, but it will be as my fellow blooger friend says " his will" I pray "his will" will bring me peace.